The Sickle Cell Foundation of Arizona convened its quarterly “Advancing Together” roundtable at Tucson’s historic Dunbar Pavilion, blending an in-person audience with a live stream to families across the state. Every quote below plays the exact moment from the broadcast — just tap it.
Trust begins with acknowledgment
After a rocky audio start that forced hosts into a good-humored “take two,” Red Cross Executive Medical Officer Dr. Yvette Miller walked the room through the organization’s history of segregating blood during World War II — a policy not fully reversed until 1948 — explaining why rebuilding Black community trust required an explicit apology. She reframed the science, too.
It's not a disease of genetics. It isn't genetic disease, but it's a disease of geography.
Sam Ross of the Arizona Achievement Foundation put the precondition for partnership plainly.
So before there can be trust, there has to be acknowledgement of wrongdoing.
Crystal Jackson of the Red Cross named the work that follows trust.
Education. Definitely education. Educating the community is big for me.
Advocacy, screening & the data to prove it
Cindy Komar of the ACT Coalition framed advocacy as both personal and political — for yourself at the bedside, and for policy at the legislature.
advocacy is important, either from a personal standpoint of advocating for yourself at the hospital, at the doctor's office, with your insurance company, or advocating for public policy at the state legislature.
Fran, who runs Arizona’s newborn screening program, described the daily work that catches the disease at the very start of life.
we every day are doing screens on every baby born in Arizona to identify newborns who have sickle cell disease.
Dr. Maui Korman of Phoenix Children’s, who leads Arizona’s Sickle Cell Data Collection work, reminded the room whose expertise the data ultimately serves.
You live it every day. You are the gold standard. You know what works, what doesn't work in your community.
Stigma, pain, and the industry's role
Foundation founder Moses Akpan spoke to the stigma patients still carry.
there are people who didn't want to shake my hand because they thought sickle cell is contagious.
Pfizer’s Chanel Grismore was candid about the limits of her own company’s pipeline — a rare, trust-building clarification.
So the gene therapy that Pfizer has is for the hemophilia community. It's not for the sickle cell community.
Banner’s Dr. Daniel Nance located the core clinical failure.
I would say it's misunderstanding regarding what a pain crisis really is.
From the school nurse's office to the app
School-nurse president Lisa Alexander turned advocacy toward the classroom.
if you want to advocate for students with sickle cell, advocate for school nurses in Arizona.
Banner’s Lori Throne described the wraparound goal for families.
And our job is to try and alleviate anything that we can so that they can focus on their child's care.
And co-host Coach Lucy Howell tied the education back to action — the 360° SCD Hub app’s pain tracker.
I was just going to say the app actually has a tracker. And sometimes if you don't track, you don't know, right?